I lost my boyfriend to cancer 'conspiracy theories’
bbc.co.uk
bbc.co.uk
It's not a debunking book. It doesn't even address alternative treatments at all. It is a kind of biography of cancer.
I think it can help because it puts faces to some of the people who have developed cancer treatments over the years. And it really demystifies the work pharmaceutical researches have done to develop chemotherapy.
https://www.amazon.com/dp/1439170916/ref=cm_sw_r_sms_apa_i_Z...
The fact is these people are too busy doing "magical thinking" when they know they are smarter than the average person and know something that the general "sheep" do not know.
But the one thing they refuse to do is test their beliefs in such a manner that if they are wrong that they will be proved wrong. When they do show effort it is more do only the things that can prove them right, failure is not an option for them.
This can be seen very clearly on that flat earther documentary. When experiment results don't show what they want, they ignore them or explain them away and are off to find the next experiment that will "prove" their theory. There is no result that can cause them to question their theory.
Inferring the beliefs of others from a tiny amount of (questionable) data is yet another kind of magical thinking. To start to get a more accurate estimate of what other people (conspiracy theorists in this case) are actually thinking requires one to exert the necessary effort in particular actions, the end result hopefully being the ability to more accurately glean what they are thinking from the words they actually write. But it seems no one is willing to put in that effort, perhaps because they want a quick and easy solution.
> When they do show effort it is more do only the things that can prove them right, failure is not an option for them.
Indeed. Such is the nature of the human mind, as well as networked collections of them. This very thread, like many others, is chock full of similar thinking, but the nature of the mind seems to render people unable to realize it.
This certainly isn't the cure-all for conspiracy beliefs but if you know someone reasonable who is just on the edge I think it could really help.
Look: https://twitter.com/perpetualmaniac/status/12845536772361297...
Suddenly the experienced friend stops and takes their map and compass. "No reason to worry just double checking everything, we are getting closer." But the inexperienced friend sees no sign of progress. This cycle repeats several times over. They walk for hours. Stop to check. No sign of progress. Reassurances. Again and again. Finally the inexperienced friend says, "I recognize this place and I think I know the way back. Let's go this way."
The experienced friend knows this is the wrong way and insists they go a different direction. After half an hour of arguing they part ways. In a few more hours the experienced friend finds their way out of the forest while the inexperienced friend remains hopelessly lost. The experienced friend finds a ranger station. A ranger there asks, "were you alone?" The experienced replies that they were not alone but it does not matter as their companion did not want to be saved.
In the argument, the experienced outdoorsman explains how the map works, how the sun rises and sets as it does everyday - he explains the compass always points north, and the map is from the national park service.
The other says "no, I'm right, because I feel right. In my heart, I know this is the right way, I KNOW I've seen this tree before."
The outdoorsman was exasperated. He had spent time arguing with a man who knows nothing of being outdoors, insisting that he was correct. When he went back to the ranger and a search party formed, it occurred to him that, no matter how much logic and reason he assaulted his former friend with, nothing would shake his faith and the argument would have gone on until they had both died, or he had run off.
They eventually found the other man - hours later. The other man was rescued and immediately saw how wrong he was, but it took something else to show that to him - true fear and failure.
The point of "not wanting to be saved" is, no matter how much you try, you can not save them, and you must move on with your life. Perhaps they will learn, perhaps not.
Or simply, stop wasting your time, when you know you can't bring the change they need.
But rarely is action taken. We've convinced ourselves that merely voicing an opinion is a heroic activity - while it remains an important one, it lacks the power of action.
But in my daily life I have encountered people dabbling in conspiracy theories but not fully indoctrinated. Having long term conversations with them has helped in some cases. By long term I do not mean hours long arguments. I mean occasional conversations over the course of months.
My SIL just died as a consequence of her faith in alternative medicines. Magnetic blankets, some herbs, some homeopathic nonsense, faith healing, etc.
More disturbing to me is that my brother went along with it. Transmuted from aspiring to be the next Jacques Cousteau to full throated fundie (young Earth, creationism, own the libtards, COVID hoax, gold bug, etc). FWIW, we were raised Lutheran.
As kids, my brother held my hand during a bone marrow transplant. At some level, he knows the truth. But he and my SIL simply could not consider rational options. Not for lack of trying. Many, many people in my SIL's social circles and church tried to intervene. She simply ghosted most of them. And threatened to divorce my brother over it.
Being an unwilling participant in their self-destruction (caring for my nephews), seeing them in action on their own turf, I finally realized the root cause is almost certainly unaddressed trauma. My SIL talked about chemotherapy like anorexics talk about food. And I'm fairly clear why my brother is a basket case.
In conclusion, thank you for your suggestion. But ignorance isn't the problem. At least these two people who reject science are motivated by other reasons.
I used to watch a talented gamer on twitch who goes on rants about how covid is a liberal scam, constantly advocates an all-meat diet ("there's no proof vegetables are healthy"), and shares YouTube videos on stuff like that. Trying to tell him otherwise only reinforces his beliefs, and he'll parrot talking points from videos. Completely soured me on his content and it's just really sad to see.
When someone lacks the scientific training or education to know whether something is a conspiracy theory, they can really get pulled in by charismatic YouTube personalities espousing nonsense. Social media is really poisoning some peoples' minds.
It makes me wonder what would happen if I watched YouTube videos every day that were misleading but well produced.
Would I eventually end up the same way?
How damaging is just repeated exposure and reinforcement to this kind of stuff? Is everyone vulnerable?
Even being scientifically minded and trying to be a good rational thinker, the way otherwise intelligent people are corrupted scares me.
It makes me extra cautious with what information I choose to expose myself to.
I do take some comfort that I was able to throw religion away even while growing up surrounded by it as a child.
I hope that means there’s a way to be more resilient to misinformation.
In theory no, if you have developed critical thinking.
I wonder if critical thinking works like a muscle that we have to train. I personally check opposite opinions on youtube, but it's scary how youtube algorithm wants to brainwash me with recommendations on any direction I take, I use the option of "not interested" a lot, to clean up recommendations.
That and the evident radical polarization, scares me.
Basically, a tidal wave of bullshit overwhelms your ability to think critically about what you are hearing.
This is because of appeals to emotions. Our intelligence emerged from the animal - which we still are.
It isn't a question of intelligence. Intelligence can be easily manipulated if you manipulate emotions, which is what most content does. Look at how easily marketing works - these things work on intelligent and unintelligent people.
The problem isn't critical thinking - that is why intelligent people argue without any progress against these people. It isn't about intelligence. It's about emotion, animal desire, and manipulation. The way to not fall into the trap is to be aware.
I eat very little meat myself, due to health beliefs, but things like food beliefs are very difficult to scientifically defend. I know of all these "plant protein" studies and the China Study but finding cause and effect with something like diet is near impossible.
Upon reflection I have the tendency to want to be right and to feel superior because of some esoteric knowledge.
The only alternative that makes any sense at all is use your brain to lay your own puzzle.
That may well put you in a position where you disagree with respected authorities/public opinion, but the alternative is blind faith which never ends well.
We all have this tendency, it manifests itself due to the limits of our own intelligence. As humans, we're not intelligent enough to understand, reason, and keep track of complicated things.
Understanding the limits of your understanding and intelligence is really hard, and in my opinion, that's the true sign of knowledge. It is very rare to find someone knowledgeable enough to have a good grasp on those limits.
Diet is not something we are smart enough to understand. Most people will not understand the complexities related to dieting and understanding it. That's why you'll have people parroting simple solutions grounded in beliefs only. It's too complicated to explain why it works, and too complicated to experiment with. So we can neither understand the principles of diet, nor can we try things and see if they work or not.
This is the current state of dieting. Like I said, all complicated things we try to find simple solutions that consistently works. So what can be more simple than say... limiting ourself to a particular food group? Try cutting out all meats. Try only eating meats, maybe cut out all sugar? Maybe eat only natural fats? Or don't eat any fat? Etc.
And the sad truth is, the limits to our intelligence is why people will believe in all kind of stupid things. Until someone actually figures it out, the folk tales will keep coming and the battle of beliefs and idiocy will rage on.
What smart people generally do when faced with limits such as those, is they turn to math and computers to help us reason about things that are out of reach of our own abilities. And until clear breakthrough are made, they take a statistical approach, where you do what at any given point seems to be the most likely model, knowing that it could be completely wrong still, but that's the best you can do to win the odds.
IMO we simply don't understand diet enough to prove what you should do. Instead, the best we can do is identify the people with the best outcomes, and try to emulate their lifestyle & diets. Essentially what Blue Zones did. You risk cargo-culting, but it's the best we can do.
I think it was quite brave of a soap to tackle that, & hopefully it's made people think if they were considering alternative 'solutions'.
[0] https://metro.co.uk/2018/11/06/coronation-street-spoilers-si...
Isn't this the same story as Steve Jobs? I recall reading that on this forum
It’s hard to know how much impact his delay had, but it’s possible his focus on alternative medicine killed him.
https://en.wikipedia.org/w/index.php?title=Steve_Jobs&mobile...
> In October 2003, Jobs was diagnosed with cancer. In mid-2004, he announced to his employees that he had a cancerous tumor in his pancreas.[158] The prognosis for pancreatic cancer is usually very poor;[159] Jobs stated that he had a rare, much less aggressive type, known as islet cell neuroendocrine tumor.[158] Despite his diagnosis, Jobs resisted his doctors' recommendations for medical intervention for nine months,[160] instead relying on alternative medicine to thwart the disease. According to Harvard researcher Ramzi Amri, his choice of alternative treatment "led to an unnecessarily early death". Other doctors agree that Jobs's diet was insufficient to address his disease. However, cancer researcher and alternative medicine critic David Gorski wrote that "it's impossible to know whether and by how much he might have decreased his chances of surviving his cancer through his flirtation with woo. My best guess was that Jobs probably only modestly decreased his chances of survival, if that."[161] Barrie R. Cassileth, the chief of Memorial Sloan Kettering Cancer Center's integrative medicine department,[162] said, "Jobs's faith in alternative medicine likely cost him his life.... He had the only kind of pancreatic cancer that is treatable and curable.... He essentially committed suicide."
> Isn't this the same story as Steve Jobs?
While much of the news media characterized Jobs' death as partly due to conventional cancer treatment coming too late, such a view is reductive given the nature of Jobs' "rare form of pancreatic cancer, called an islet cell tumor or gasteroenteropancreatic neuroendocrine tumor (GEP-NET)" [0].
Not much conventional medical literature exists regarding the treatment of GEP-NETs (presumably due to their rarity) and Jobs and his care providers had to make choices without much evidence to guide them. Quoting from the above-cited article:
> [W]hat many journalists failed to note is that the evidence supporting any specific conventional treatment approach (surgery, chemotherapy, radiation therapy) for GEP-NETs comprises a slim literature, and the evidence base for use of CAM [complementary and alternative medical] therapeutic approaches for GEP-NETs is virtually non-existent. After a delay of nine months after diagnosis, in 2004, Jobs opted for surgery. He died 7 years later. [0]
Reminds of of the "fasten your seatbelt" campaign. I can't find a source, but I remember that line being inserted into movies before action sequences as a bit of a PSA. There's a lot TV shows and movies can do to educate people about things, to the point that the way diseases are shown in media should be researched and taken seriously.
My uncle offered her some kind of herbal tea as a solution to her cancer. Grandma had a worse view of alternative medicine than the actual medicine she had already refused. I had never seen her so upset with my uncle. Her reaction has stayed with me.
I don't believe in naturopathy either, but I wonder if it still has a positive impact for those whom believe in it, ie. the placebo effect.
I have a family member with lung cancer and when they felt traditional options have been exhausted, they went full alternative. TCM and such.
2 of them said, after beating it, that they would have chosen to die if they could do it over. One of those people was treated with modern immune therapies, which still left him permanently messed up. My other friend with cancer isn't around to tell me his thoughts on it.
At this point in my life, 45 with no kids and good life insurance, I would not choose to fight cancer if I developed it.
Sorry for the ignorance, but what does that expression mean? I've never seen it before.
It's a fucking terrible way to die. FWIW, the AIDS patients down the hall had it as bad or worse.
It took me a long time to think the effort was worthwhile. And if people like me didn't get fed into the meat grinder of progress, we'd still be banging the rocks together.
It all depends on the cancer and the prognosis of course but undergoing all kinds of radical treatments with low chances of success ends up robbing you of those last weeks better spent on seeing the people dear to you.
This is a major problem; not only did this stupidity cost him his life but he also put others at risk.
Should alternative therapy posts and advertising have unlimited distribution on fb/instagram?
Celebrities (or frankly any social media idiot without relevant medical credentials) should not be making medical claims, otherwise we get things like Goop, bullshit essential oils and magic rocks to protect against 5G.
Any platform that amplifies the reach of these posts should also be held liable.
It is the ability to not let go - we don't want these things to happen. We want to have hope that something out there can save - and these emotions are abused. It makes it all the more dastardly.
If I were to be diagnosed with cancer tomorrow, I don't know what I'd decide for myself. Of it depends on the diagnosis, if it was just a small skin cancer they could just cut out, sure, let's do that.
But if it was something more pernicious, like the Hodgkin lymphoma, I might refuse chemo. I may prefer to just get my affairs in order while not going through chemo, and just trying to appreciate what days I have left. And being able to appreciate the days I have left, because chemo can really knock you out. What's the point of getting more months of life, if you can't do anything?
I wouldn't put any of my hopes in an alternative medicine cure, but I've been studying science in various forms for a long time. I have a reasonable knowledge of what might work and what wouldn't.
I sympathise with the way you feel, but here he did not refused treatment to better live the time he had left but chose "alternative medicines" instead. The discourse in those online communities is not that you should appreciate the time you have left but that they can heal you.
Those are two very different situations and while the outcome is sadly identical, they should not be conflated.
The sedatives and painkillers, are the biochemical discourse that you feel like you heal / healed.
When my father was dying from cancer, the doctors said his treatment was curative not palliative, which is essentially the same discourse you are offended with.
I'm not offended, I'm pointing out how the situation differs.
If doctors gives inaccurate information, it's an important problem that needs to be discussed.
> the doctors said his treatment was curative not palliative
In the present case, it seems like it was not the case: "At the time, Sean’s doctors told him he had at least a 50% chance of long-term survival if he underwent chemotherapy", while the alternative medicines gave false information: "Sean also relied on "thermographic scans" - heat images of the body" or "I’d use words like, 'oh no it’s the Herxheimer’s reaction'".
It seems to me like we are preaching for the same thing, which is to give the correct information to the patient and let him decide.
You have X chance of Z time, etc.
But that's statistics, you as an individual will often fall in the normal range in your stratified group. Except when you don't.
27 Years old, I was dying of cancer really bad, it is worse than chemo, I didnt know it, but I was dying very bad. It felt like the worst flu ever, with constant cold symptoms, fatigue and night sweats, it was so bad I had to change several times a night. It was terrible.
When I was diagnosed with stage 4 bowel cancer with secondary cancer in my liver, I thought that was it, I have screwed up bad and should have gone to the doctor earlier.
The first meeting with my oncologist he said the chemotherapy is to give you time, it is not a cure. I didnt ask how long, it is nothing I want to know. He said he will throw what ever he can at me, since I am fit and young. Even though there was no reassurance, I felt much better after this.
So chemo, it sucks, I was on a 2 week cycle routine, which meant usually, go to the clinic on Thursday, get 3 different drugs over 3-4 hours. Some are fine, like oxaliplatin (and quite interesting when its cold outside), others hit you right in the head like irinotecan (this one sucks bad, kicks you in the head hard and make you feel sick), and finally 5fu which is much milder than irinotecan. The 5fu I would get as a pump which administered it over 46 hours or so at home.
So Thursday, on the day I feel bad when administered, would say a 3 when irinotecan hits. Afterwards mby a 6 or 7. I would have energy to work this day if I wanted.
Friday, did go to work some days with my pump. Feeling probably a 5-6, energy a 7.
Saturday, pump disconnected and the fatigue starts to hit, Feeling probably a 5, energy a 5.
Sunday, Feeling probably a 4, energy a 3.
Monday, Feeling probably a 3-4, energy a 2-3.
Tuesday, Feeling probably a 4, energy a 4.
Wednesday, Feeling probably a 5, energy a 5.
Thursday, Feeling probably a 6, energy a 6.
... It would improve until the next Thursday where I would be feeling probably a 8, energy a 8-9.
So by the time you go back for more chemo you would feel quite good. So on average I worked one week every two weeks.
Now, as soon as I started chemo, much of my cancer symptoms started to melt away, no more gut wrenching pain in my bowels, no more regular night sweats because my liver is shutting down, not feeling like having a flu, this is after 2-3 cycles of chemo. Chemo can make your quality of life better, it did it for me. Chemo sucks and I was lucky that I found ways to eat, keep my weight and stay healthy and positive.
In the end, I managed to have liver surgery and bowel surgery and am now cancer free. My oncologist didnt think that I would survive until surgery, and was lucky my chemo was soooo effective. 1 year from diagnosis to cancer free, I am lucky.
But of course, this is an individual experience, but I would say, dying of cancer suck more than chemo, for me.
Especially after having gone through the broken NHS system once. If I was in his position I too would do anything to avoid them, although I admit that if I were him I would rather move to a country with a better healthcare system than use weird snakeoil magic cancer curing items.
Strongly recommend reading "The Unwinding of the Miracle" by Julie Yip-Williams (https://www.goodreads.com/book/show/39216478-the-unwinding-o...). A NYC lawyer and mom diagnosed in her 30s with Stage IV colon cancer, she provides a document of her thought processes as she is confronted with terminal cancer.
She describes the multiple types of modern medical treatments and trials she participated in and (with her oncologists' permission) flirts with Chinese medicine and alternative diets and treatments. It really is unflinching and uncomfortable look at the disease from a patient's point of view, but also a beautiful book.
[0]https://en.wikipedia.org/wiki/Bob_Marley#Illness_and_death
In fact, as I typed "apricot kernel" into the search bar, Amazon suggested "apricot kernels bitter seed for cancer". That seems dangerous to me.
Instagram hosting false cures (memes) like thermographic scans, coffee enemas, and other whackadoodle bullshit is profiting from death, misery, despair.
I'd have a wee bit more tolerance for Freedom Speeches™ advocates, and their specious slippery slope blather, if they acknowledged that rights come with responsibilities. So go ahead and tell your lies. And then rot in jail.
Similarly, Freedom Markets™ assumes rational actors with perfect information. I invite everyone who blames the victims to hang out in the oncology waiting room, see the desperation. Tell me that if it was your child or your husband sitting there, you wouldn't do absolutely anything, no matter the cost or the long odds.
I'm thinking it's a safe bet that there's a deficiency in the NHS' delivery of counseling and mental health services for those facing mortal crisis.
Belief in conspiracy theories is the specific issue from a whole class of problems: what is the most important thing you believe, how do you know it's true, and is that good enough or do you need to take additional action in case it's false?
> Soon after Sean found out his cancer had returned, when he had decided he was rejecting chemotherapy, the pair found themselves watching countless YouTube videos
it seems that he first decided not to undergo chemo, then clinged on whatever he could.
Though I also believe that in the case of cancer, until a definitive cure comes out, chemotherapy is probably as good as we can get, and I don't really assume any ill intent on the part of the people who invented it, even though it's perfectly understandable that people (even including Steve Jobs) try to seek for alternatives when it doesn't work out. But I do think that it is not entirely meritless to keep a healthy dose of skepticism on the drug industry, especially given precedents that are plain to see such as the rampant opioid crisis, as well as the dubious practice of using antidepressants on juveniles etc. etc.
I also wonder if this is a argument for there being value in investing in ways of making chemotherapy less traumatic even though it wouldn't be making it more effective, just less psychological damage
The attitude in this thread is ableist.
Sick people are intelligent. Sick people are capable. Sick people can feel what is happening in their bodies. And they have a right to seek treatments they deem best.
Sick people often seek alternative therapies because doctors do not have any treatments to offer, or the treatments they do offer have devastating, profoundly life-altering side effects. Many of these sick people are going to die anyways. It is cruel to treat them like crazy conspiracy theorists because they choose to fight back in hopes of a cure.
When it gets to this point it makes sense to strike out on your own. Some have success. Others do not. But it's a battle that has to be fought unless you want to just give up and lose the life you had.
I really struggle to understand why healthy people are so hostile towards sick people who are just trying to survive. Yes, it's sad to watch sick people desperately seek for effective treatments. But just imagine how hard it is to be that sick person desperately searching for effective treatments while your peers treat you like you're crazy, and then simultaneously refuse to provide any reasonable alternatives.
One of the foundational principles I use to reason is "if there was a free-lunch (i.e. a higher-ROI solution—more reward for less risk), then anyone truly motivated to solve the problem would have switched to it, or at least added it to their offering as an extra hail-mary on top of their current approach. Given that they didn't, the free lunch must either not be free (i.e. no less risky), or not be much of a lunch (i.e. not rewarding.)"
Yes, in this case, you've got a system with mixed motivations; the FDA isn't motivated to solve problems, so there might be some beneficial drug that isn't on the market. But that doesn't mean that your doctor in particular—someone who is motivated primarily to solve your problem—won't still tell you about such drugs, and help you to acquire them through grey-market channels. Doctors do this all the time—they get patients into drug trials, order in drugs from the medical systems of other countries, acquire new-old stock batches of drugs no longer produced, etc. They also will just tell you to eat a certain food or take a certain supplement as your "prescription", if doing that is a higher-ROI solution than any drug.
If doctors are only offering you treatments with devastating side-effects, that's because those are the highest-ROI treatments that exist. Doctors always prioritize safety over benefit[1]; the only time they offer unsafe treatment is when there is no safe treatment—or at least no safe treatment that pays for the costs of going through it by actually having a non-zero likelihood of helping you.
[1] For example, doctors use known placebo-equivalents as the first-line treatments for many psychiatric conditions, because placebos have no potential risks; so even if the likelihood of remission from placebo is low, as long as it's higher than zero (which it usually is in psychiatric conditions), doctors want to first make sure you aren't someone who would go into remission from placebo, before moving onto trying to treat you with drugs that actually do something (and therefore have risks.)
Are you sick? Because millions of sick people disagree with you. You can't read about our experience in a book and tell us how things actually work. You have to live it.
And if you work in healthcare, well, you only see the sick people who have the time and financial resources to navigate your tyrannical bureaucracy. And you won't see any sick people with an illness you don't understand, because we learn to stop wasting our time and money with you quickly.
"Doctors do this all the time—they get patients into drug trials, order in drugs from the medical systems of other countries, acquire new-old stock batches of drugs no longer produced, etc."
Maybe a small small percentage of doctors. Finding them and affording them is not something most sick people can do.
He had the option of chemotherapy with a 50 / 50 chance of long term survival.
The article is not about seeking alternative treatments as a last resort, it is about disregarding well proven science in favour of unproven (and in this case ineffective) alternatives.
If it becomes ableist to critique those who follow fake medical advice from the internet, how would we reduce the this happening? If people are dying as a result, that's a public health issue and it deserves attention.
"If it becomes ableist to critique those who follow fake medical advice from the internet..."
This is ableist because it claims that sick people are incapable of determining what is good advice and what is bad advice.
But that's exactly what happened here, the sick person was taken in by charlatans. How is that ableist? Not-sick people are also taken in by charlatans all the time, we blame the charlatans, the scammers, the frauds and the snake-oil salesmen for preying on people.
You are taking one case where the patient chose to follow bad advice, and using it to suppress the voices of hundreds of thousands of sick people.
I'm condeming those that peddle false information and profit from the sick as they do so. It's a shame you take that as an attack, but that's on you.
This article and Hacker News thread is largely comprised of healthy people trying to control what sick people think, feel, and say. And on top of that, you're trying to censor their discussions using government-backed violence. That is the conclusion of this article and many of the comments in this thread. I am sick and I fight against these authoritarian policies every day to get the information and medicine I need. I live in excruciating pain every minute of every day and then I have to argue with a bunch of clueless healthy people about what I can and cannot do with my own body.
You are at the very least advocating for others to attack me. Using government backed violence to prevent me from accessing the information or medicine I want _is_ an attack.
If the medical industry is so correct, then why aren't they curing people?
Why is the work of biochemists ignored in the health care industry? (in many ways they understand the human body better than doctors do)
Why do I have 1000's of people I've connected with online who have successfully treated/cured their illness? Do you think we're just making this all up for attention? Because the attention we get is far from positive. We are excluded by civil society. We only survive by hiding what we really think. The purpose of this hacker news account is to build up karma and then burn it in order to say these things. I can't just say them without paying a cost.
Yes, it is. He was taken in by people peddling false information. We know it's false information.
Your weird equivocating about this and demand for it to be taken as some sort of personal offence is ridiculous.
> If the medical industry is so correct, then why aren't they curing people?
You might have fallen down the rabbit hole, please be careful down there, it can do more harm than good, as this article shows.
(If you want to trade insults, your argument is anti-intellectual.)
I strongly disagree. Making choices for other people is tyranny.
Edit:
If you're referring to the term "ableist" as in insult--it is not. It is a technical term that accurately describes the logical conclusion of many of the arguments being made in this thread.
"The general public is not capable of determining what is good advice" because "experts" is not an argument. It's a belief. If you want to have an intellectual argument you've got to form an argument that I can respond to.
Yes, there are quacks, but there is also cutting edge science that is not widely understood. You are blaming the people the victim chose to listen to, and therefore, you are blaming the victims choices, claiming that they were a "conspiracy theorist". You are blaming the victim.
They were among the other four.
I've monitored progress on medical knowledge and treatment of the condition over the ensuing decades. What I've learned is that:
- It's now possible to directly detect the genetic marker of the condition. We have improved detection and precision of Dx.
- The actual therapy ... is effectively unchanged. The chemo and radiation therapies they'd received were essentially unchanged over the preceding two decades, and were based on chemicals and mechanisms already in use in the 1950s (though dosing, quality, and side-effects mitigation are somewhat improved).
- The compounds themselves date to World War One, poison gas, and human experiments now considered crimes against humanity. History is interesting....
- These treatments remain largely unchanged in the decades since my friend's death. And five-year mortality for the condition remains about 80%.
That's the science: fifty to seventy years of effectively no progress. Not for want of trying.
From a point of view of assuaging Past Me that we'd pursued and received not only the best of all possible treatment, but hadn't missed out on any late-breaking developments, this information is comforting. Operating in the ultimate domain of uncertainty, of what the future might bring, we'd made the best decisions.
And yet at the time, in an era pre-dating the Web (though I did at the time have access to the pre-Web Internet), "helpful" people offerred various "nontraditional" therapies, the most frequent revolving around "laetrile" (https://en.wikipedia.org/wiki/Amygdalin#Laetrile), acyanide-based compound repeatedly demonstrated to have no therapeutic effectiveness, and multiple risks, since the 1960s. Despite this, treatment "clinics" had sprung up, notably in the Caribbean and in Mexico, offering the "treatment", at a steep fee. (Actor Steve McQueen is among those who'd fallen prey to the scam.)
I ran interference for those closer to my friend by intercepting, assessing, and discarding any such literature. In the heat of fear, uncertainty, confusion, doubt, and guilt that are the hallmarks of dealing with grave illness, adding more useless malicious and fraudulent bullshit to the informational mix would have been actively harmful, both medically for the patient and psychologically for them and all caregivers.
And I remain glad I did.
But this lack of progress is what I find so frustrating, along with the hostility towards anyone who is trying to change that. Many sick people are willing to take a risk to progress the science. The insistence on 100% safety and unpractical clinical trials that only allow for patent-able medicines is ultimately killing more people by stalling progress. We haven't really cured a major disease in over half a century. That needs to change.
If a sick person claims that some sort of alternative therapy cured them, then there is absolutely _something_ there. It cannot always be explained away by the placebo effect, as the placebo effect is temporary. You're not going to cure a chronic disease with the placebo effect. These are important data points that need to be discussed. And a sick person should be able to discuss it regardless of their credentials. Their first-hand experience is valuable and contains objective truth.
But I agree that to claim that since an alternative therapy cured one it must cure all is irresponsible. Often times we do not even know what the root cause of an illness is, and until you do, just because two people have the same symptoms does not mean they have the same disease. There's also the issue of co-morbid diseases. There is rarely a one-size-fits-all approach (and it's seriously unfortunate that modern medicine insists that one treatment must work for everyone, otherwise it's quackery).
Other close friends have worked in the pharmaceutical and clinical trials sectors, I've a strong awareness of what goes on there.
There are numerous avenues which have been, and remain to be, explored. My friend themselves participated in several novel therapies once established protocols proved insufficient. We pursued all clinically plausible options, to the point of exhaustion (treatments themselves are often tremendously debilitating), even where not yet proven.
The hostility is not towards "anyone who is trying to change that". There is all the encouragement on Earth for such efforts. Watching masses of growths grow and consome someone you've held quite dear is not easily forgotten.
But those who exploit, possibly innocently but all too often with sheer uncaring deliberateness, the fear, ignorance, guilt, grief, and desperation of patients and thei loved ones beyond all hope is the one thing I've seen uglier than those growths.
The laetrile pamphlets I intercepted and burned 30 years ago went to great lengths to justify their clinics' and promoters' opposition to structured clinical studies, on the grounds that this would deny ssome patients (the control group) useful therapy. But this omits two key facts:
1. There've been numerous studies of the compounds and there is no clinical sign that of medical benefit. For nearly 60 years now.
2. Refusing to certify and demonstrate the compounds withholds the treatment, if beneficial, from vastly more beneficiaries. Of course, as the treatment is a fraud, this harm is fictional, but it. utterly undermines the fraudster's arguments. Their overwhelming insincerity aand self-serving aims are manifest.
There are several other common fallacies in your response I won't bother addressing, save to say in balance you're accomplishing far more harm than good here, and if you have the least bit of sense or decency you'll stop.
The problem is when people advocate treatments that are completely unproven, when a more effective treatment is available and hasn't been explored (I realize that he'd already tried chemo, but he was in remission from it previously, so it was definitely effective). That's what happened here - he had a 50% survival rate, which became 0% because of misinformation people shared with him online.
If the goal is to survive, then you do what works best. Chemo, radiation, and whatever else the doctor says will give you the best chance at survival. No one says it'll be fun, but you maybe get to live.
The problem is that we are all fallible. We are all gullible. And when we are at our most vulnerable, these snake oil salesmen are at our doors ready to sell us a fake solution to both the problem of suffering and death. And they're liars. The suffering won't be avoided, nor the death, but they'll have your money. It's murder and robbery at the same time.
Actually mostly I'm railing against the crazy conspiracy theorists who prey upon sick people and sell them snake oil.
The sick people themselves have been misled by charlatans.
He was given a 50% chance if he went the conventional route, but due to the actions of utter arseholes who peddle conspiracy theories, he turned down the conventional treatment and died.
It's not him that is the target of anger. It's those that preyed on him.
A statement like "there is no credible evidence that thing helps" really can't convince an alternative treatment enthusiast to give his idea up. "Obiviously" there is no evidence because nobody no scientist for it.
We need to be able to tell them honestly: "we have tried hard, hundreds different people were studied thoroughly for this particular treatment, it really doesn't help or only helps slightly a particular kind of patients you don't fit, please go and get treated the way proven efficient".
you are not testing the treatment, you are testing the development of the cancer in the patient, regardless of which treatment they get.
simply test everyone diagnosed with cancer on a regular basis just like they get tested when they do the recommended treatment.
in other words, if someone refuses the treatment, don't let them refuse the tests as well.
I've always worried if I would have the strength to fight or cave.
Cancer is not s single disease, with a common origin, treatment, or outcome. It is a common characteristic --- malignant cell growth --- with multiple distinct manifestations, causes, prognoses, and treatments.
Knowledge of what specific condition is being faced makes a huge difference in response options.
> Soon after Sean found out his cancer had returned, when he had decided he was rejecting chemotherapy, the pair found themselves watching countless YouTube videos
It seems to me that he had already decided not to undergo chemiotherapy, and clinged on whatever it was available, or at least, more subtly, he deeply wanted to find any other cure that was was not chemotherapy.
While cancer conspiracy theories are certainly damaging, if the reading above is correct, such theories correlated to his death, didn't cause it - he may as well have turned to religion, drugs or anything else.
The alternative medicine community it complicit in many avoidable deaths. It's a testament to the power of self delusion that they can sleep at night.
"At the time, Sean’s doctors told him he had at least a 50% chance of long-term survival if he underwent chemotherapy. But after reading a lot online, Sean believed he could cure his cancer by detoxing and completely changing his lifestyle, avoiding the gruelling side effects he remembered from chemotherapy."
Though I agree the phrasing is inconsistent with what you found later on in the article there, this suggests that the alt-med community sold him on a 100% chance of survival without needing chemo, so he rejected chemo.
I guess we don't know without them saying explicitly, if he would have had the chemo if he hadn't found alt-med, but that's certainly what the girlfriend feels -
"My thoughts on alternative cancer treatments have changed, I believe it cost Sean his life."
Yes, it's expensive and difficult, but maybe "gatekeeping" is not so bad, given the intellectual and emotional pitfalls of being human and the number of people out there who have it to their advantage for you to believe false things.
75% of the world population believes that there is a god, despite not having a single tangible reason to belive that.
Somehow they have a need for simple, rigid explanation for the world. One that is always right. All these medical scams perfectly fit that paradigm. They are right, not like these pepole who have a "theory".
Ultimately I think they are happier.
I find it's hard to blame people when there's such a storm of information surrounding these things. It's easy to see how even very intelligent people can pick the wrong remedy.
Also I used to think it was clear cut, but I've run into doctors who believe in homeopathy.
Yes, he did. Then again, pancreatic cancer, even the "milder" form he had, does not have a great prognosis, and he lived another 8 years after the diagnosis.
> I've run into doctors who believe in homeopathy.
Hope you ran out on them as well…
* Edit: I shouldn't have equated the dangers here. This was a bad take. I still believe there are good bits of info provided in the video, but the relevance to this thread is less than I considered and I should have thought more about what I was sharing.
Edit 2: I didn't mean to link to a specific timestamp of the video in the original link. That has been removed.
"Memes" on Instagram and other social media platforms disguised as misleading and inaccurate health advice is the actual problem.
Looks like the word "Meme" in 2020 is now totally different to when it was used in 2006.
meme (n.)
"an idea, behavior, or style that spreads from person to person within a culture," 1976, introduced by evolutionary biologist Richard Dawkins in "The Selfish Gene," coined by him from Greek sources, such as mimeisthai "to imitate" (see mime (n.)), and intended to echo gene.
https://www.etymonline.com/word/meme
Gene: from Greek genea "generation, race".
Saying "meme came out of gene" is a perfectly reasonable statement.
This applies similarly to low-truth-valence ideologies and belief systems, for which current and pending crises may prove strong checks.
The pop understanding robs ideas of their context in systems of ideas, rendering them isolated sound bites with no integration or higher level thought. It promotes a kind of Orwellian "duckspeak" and the utmost short attention span culture.
I don't think it's a coincidence that meme culture dominated forums originate all the worst ideas and culture on the Internet. I am looking at Twitter with its ideological lynch mobs, 4chan, and the popular Reddit forums.
Richard Dawkins originated the concept, and for him it was only a speculation anyway. In any case Dawkins has never impressed me. He's not the greatest thinker in evolutionary theory by any measure, and he's among a collection of people who lost their minds after 9/11. I have no idea why he is so high profile.
I have no context here. What do you mean?
That’s essentially the extent of the analogy to genes and is basically self-evident.
The coarse structure of known space resembles brain tissue when rendered in a certain way, therefore the universe is a giant brain.
I could go on forever.
Reason from first principles, not by analogy.
At a certain degree of chemical complexity, things start behaving like organisms, and in fact soon thereafter we just call those groupings/combinations of chemicals “organisms.”
The distillation to first principles is: anything that reproduces with some error then must compete for finite resources, where failure precludes propagation, will “evolve” toward higher fitness (given the particular context/environment).
This first principles explanation of evolution can be readily applied to ideas, thus: memetics. Memetics was not arrived at by analogy to genetics. Both were derived from the same first principles of replication and selection.
To really do that you would have to show that the brain works like a genetic/evolutionary system, and that does not appear to be the case (or at least we do not know enough to say that). There is so much context there. You can't just do superficial pattern recognition and then force fit an entire theoretical model. It's lazy.
I am not saying ideas are nothing like genes, just that they are not the same thing. You can't just steal theory from another field without context. Seriously... name one case in science where that has worked. Things are what they are, and not necessarily what they superficially look like when viewed from a certain angle and lots of details are ignored.
Also as I said the pop understanding of memes is far less interesting than Dawkins speculation and basically reduces ideas to isolated grunts. It's a form of "conceptual thought denialism."
In practice now, memes are exactly what the GP says: manifestation of simpletons communicating on the Internet.
For example, if you just say, “that’s our culture,” it’s very tempting to accept it as an intrinsic property of your society/company/team. If you say, “that’s the collection of dominant memes for this particular environment at this particular time,” it gives you some avenues to start 1) decomposing a monolithic culture into its component pieces and 2) explore why those particular memes are so dominant in the particular environment.
The latter route, IMO, will expose many more levers for you to play with if you were to want to, say, modify a culture.
Memetics, or whatever you are willing to call it, is not. Mostly a way for people with frog avatars to sound important.
Consider a mathematical "culture" where proofs are generated by some AI, propagated between nodes, and each node that receives a proof checks if it seems valid before propagating it to the next node.
What kind of proof survives that kind of culture has a lot more to do with the nature of mathematics and the proposer AI than it has to do with the dynamics that every replicator system has in common.
In other words, it's very easy for pop memetics to go back and forth between a position where "it's all replicators, the memes are just using you to replicate themselves" and where "obviously, the objective content of the idea matters more than their replicability".
How much the spread of ideas in a society is one compared to the other depends on parameters that differ from system to system. Treating them all alike does a big disservice to the grand variety of systems that exist, and using the concept of replicator dynamics to pretend that the intellect is always a servant to the system is worse still.
api is right that memetics as a field is in disrepute, considered pseudoscience by many. That doesn't mean the premise of ideas propagating through the population, surviving or dying based on various criteria, is totally bunk. But you have to be willing to distinguish the concept of memes from 'memetics as a science.' I think it's a useful analogy, but it has limitations.
One hazard of memetics mirrors a common hazard in discussions about genetics. Anthropomorphizing genes by saying things like "the gene wants to replicate" or "the gene is selfish" is common for obvious reasons, but you have to be careful to not take it literally. When you make the analogy between genes and ideas, that habit of anthropomorphization comes along for the ride, and in the process ideas are given agency of their own. Saying that the idea has agency of it's own, that it self-replicates, is in some sense tantamount to questioning the agency of the humans participating in the spread of the idea. In brief, memetics steps on the third rail of free will.
I agree completely!
This is a good story about poor choices made by an individual, but I hope it is not fodder for any attempt at regulating what free people choose to do with their lives. I think we need to do a better job at educating people on the dangers of freedom...what do you guys think? Perhaps we need some sort of "media literacy" education at the primary school level that trains people in evaluating sources of information ( which seems to be reserved for the university level in many cases, unfortunately ).
My thoughts are with the family of this man.
Edit: Wow, I'm surprised at the negative response to my comment. What is so controversial about my views here?
This is not an argument for regulating information, you are still free to peddle quack as long as you don't make false or unproven claims, and if you are sure your "quack" is actually legitimate you are free to do research, studies and tests just like the supposedly-evil "big pharma".
I believe going to a doctor is the way of accessing "proven information."
> eradicating quack therapies based on false claims that don't work because they unfortunately put people (like this man) at risk.
What would the mechanism for "eradicating" these "quack therapies" look like?
> the supposedly-evil "big pharma"
Well, can we really say big pharma isn't evil to some degree - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2622774/?
Either that or government-approved websites (like the NHS is providing in the UK). It is in the government's best interest to keep you alive for as long as possible (if nothing else, just so you can pay tax longer), and while they aren't always perfect (like the current covid-19 response from some countries) I would still trust them more than some random people playing doctors on social media.
> What would the mechanism for "eradicating" these "quack therapies" look like?
Outlawing unproven medical claims, and actually enforce the law?
> Well, can we really say big pharma isn't evil to some degree
Perfection will never be achieved, but if we take all the effects of "big pharma" (both good and bad, across all diseases) and compare it to the effects of backyard quack medicine, who wins? I'm willing to bet good money that big pharma wins by a large margin, so I'd be willing to trust them until there is enough evidence that says otherwise.
Would faith based approaches fall under your definition of "unproven medical claims?"
I get what you are saying, but if someone wants to take their chances on some "quackery," shouldn't it be their right to do so? Obviously this individual knew that he was engaging in alternative medicine that is not recognized by the mainstream.
I don't believe in this particular alternative medicine, but I don't believe established science understands everything in this world and believe individuals should retain the right to explore alternative perspectives.
Yes, I don't see why it shouldn't.
> I get what you are saying, but if someone wants to take their chances on some "quackery," shouldn't it be their right to do so?
The problem is that quackery being around puts people at risk like this man. This man didn't outright decide to do quack, he decided based on unproven claims made by the quack peddlers that this alternative treatment would somehow work and be better than the conventional, modern medicine.
Furthermore during his alternative "therapy" he not only did it for himself but attracted a large following online, claiming that this treatment was working and thus encouraging other people to go down the same path.
> I don't believe established science understands everything in this world and believe individuals should retain the right to explore alternative perspectives.
Established science has never claimed to understand everything. Established science adjusts its understanding of the world based on evidence and is constantly doing new research to further that understanding. I find it very unlikely that someone playing doctor on social media would do better than a multibillion-dollar industry.
This is extremely dangerous. The complexity of human biology and our ethical standards don't intersect in a way for any treatment to be 'proven'. There is just statistical evidence of efficacy for some subset of humans who's condition is materially in the same vicinity of any given patient. However, any given patient has zero control over what testing has been done on any given intervention, and therefore may have a perfectly viable treatment left legally outside of their reach because we just haven't got to test their case yet (and may never).
I'm not saying I necessarily agree with naturopathic solutions, but people seem to lose the ability to reason about probability after the fact.
This is not to make light of the situation, but more to say "don't beat yourself up" about a bad thing that happened.
It's far less of an effect, if what I've read is to be believed, when measured against things like terminal cancer.
Sum % positive reasons of not doing chemo: n% chance that you'd recover without doing anything n% chance that these naturopathic cures do somehow cure you n% chance that the treatment would actually make things worse
It's a garden of forking paths. You can't just reason about this with one number. Choices are hard. People die. Just a matter of order.
Alternative treatments don’t guarantee higher success than modern medicine. However, if modern medicine puts the chance of survival at < 5%, it’s not a bad idea to try fringe approaches.
Modern science aims to create a standardized approach for categorized diseases. Controlled experiments aim to find a magic bullet, but are these experiments really “controlled”?
Everyone eats differently; everyone shits differently. Different air quality; stress levels; sleep; metabolism. Not to mention, the body and its disease are both is ever-changing systems over time. Until we have nano-machines, we won’t know the true cause and effect of all these variables.
Therefore, the holistic approach* is to use intuition, adaptation, and nonstandard ways to deal with this recognition. The downside of this approach is the amount of information and the ability to determine the credibility (eg. random social media), especially for a layman. However, if one was knowledgeable enough to read thousands of academic papers, from various fields (outside of oncology) -- one could develop a more tailored plan for the individual that accounts for these other factors.
*Holistic approach does not mean disregard of science. It does not mean rejecting standard protocols. It means that one should consider a wider-range of factors, in addition to standard protocols. It is an approach that places more value on breadth.
Fringe approaches would not be considered "fringe" if they were proven to have an effect. Even if it improves your survival rates by merely 1%, it would be still used as part of modern medicine if there was nothing else.
The problem is that the quack makes you believe that it will work, so you're still wasting time trying the "treatment" and potentially suffering its side-effects (not to mention the financial impact). It's worse than not doing anything, since at least the latter means you've accepted your fate and can enjoy whatever time you have peacefully instead of being busy with a quack treatment.
Furthermore, modern medicine isn't inherently hostile to "alternative medicine". If you think about it, all the potential treatments being researched in labs right now (including for covid-19) are still at the "alternative" stage, and if they end up being proven to work they simply become "medicine". What modern medicine is hostile to is unproven, or proven not to work treatments.
If you think you actually have an "alternative" theory that isn't quack, you are welcome to do your research on it to at least rule out any existing reasons why it couldn't work (using existing medical literature), and if the theory still stands by then you are free to engage with the mainstream medical community or study, become a researcher and then test your theory in a safe and controlled environment so the outcome is actually valuable (and will influence further research even if this particular theory doesn't work) and not just anecdotal evidence.
On and on and on and on. The decision tree is so deep and patient communities sliced into smaller and smaller subgroups that we don't have enough people on the planet to 'prove efficacy' for them all (as if such a task is even possible, the most we usually get is evidence of efficacy in similar cases).
You cannot test many things. You also cannot prove many things. Look at nutrition. Determining the cause and effect of a substance on a human body is difficult.
Science is aimed at proving things. Sometimes, in life, that luxury is not available.
Sounds like a great way to get scammed by charlatans, and potentially interfere with the treatment you're receiving from medical professionals.
Perhaps curcumin works for one , not another. Perhaps the same curcumin works now, but not later. Or perhaps you'll never knows if it works at all. Being able to measure it is difficult. Welcome to the game.
It is a process that combines both thinking and feeling. (Intuition). Perhaps one day you step in shit. But the next day you find a flower. There is no right or wrong answer.
I do believe there are "charlatans" -- if that's what you want to call it -- who are attuned to this type of flow, or practice.
"Selling" these techniques or drugs complicates the matter. And this is why [alternative] therapies have a negative taste in scientific communities.
Have you done so? Has anyone who follows "non-standard" approaches? (Yes, I'm aware that a few instances have; they generally become the "standardized approach", too.)
In the end, it comes down to intuition.